Bill Text: DE SCR116 | 2023-2024 | 152nd General Assembly | Draft

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Bill Title: Designating February 29, 2024, As "rare Disease Day" In The State Of Delaware.

Spectrum: Partisan Bill (Democrat 3-0)

Status: (Engrossed) 2024-01-25 - Passed In House by Voice Vote [SCR116 Detail]

Download: Delaware-2023-SCR116-Draft.html

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SPONSOR:	Sen. Townsend on behalf of all Senators
Reps. Baumbach, Griffith on behalf of all Representatives

DELAWARE STATE SENATE

152nd GENERAL ASSEMBLY

SENATE CONCURRENT RESOLUTION NO. 116

DESIGNATING FEBRUARY 29, 2024, AS "RARE DISEASE DAY" IN THE STATE OF DELAWARE.

WHEREAS, there are nearly 7,000 diseases and conditions considered rare, each affecting fewer than 200,000 Americans, and only about 500 have approved treatments in the United States, according to the National Institutes of Health; and

WHEREAS, while each of these diseases may affect small numbers of people, rare diseases as a group affect almost 30 million Americans; and

WHEREAS, many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and

WHEREAS, while more than 450 drugs and biologics have been approved for the treatment of rare diseases according to the Food and Drug Administration, millions of Americans still have rare diseases for which there is no approved treatment; and

WHEREAS, individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and

WHEREAS, while the public is familiar with some rare diseases such as “Lou Gehrig’s disease” and sympathetic to those affected, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments; and

WHEREAS, one example of a rare disease is Lissencephaly, a condition that is characterized by agyria or pachygyria, which means absence or incomplete development, respectively, of the brain gyri or convolution, causing the brain's surface to appear unusually smooth with an estimated less than 1,000 individuals diagnosed worldwide and many others undiagnosed; and

WHEREAS, thousands of Delaware residents are among those affected by rare diseases since nearly 1 in 10 Americans have rare diseases; and

WHEREAS, as of July 2023, Delaware became the 27th state to establish a Rare Disease Advisory Council through the passage of SB 55 to raise awareness and create a platform to educate the public, state agencies, and the General Assembly about rare diseases and to make policy recommendations that improve patient access to critical health care services; and

WHEREAS, the National Organization for Rare Disorders organized a nationwide observance of “Rare Disease Day” on February 29, 2024, to provide an energy and focal point that enables rare diseases advocacy work to progress on the local, national, and international levels; and

WHEREAS, thousands of patients and caregivers, medical professionals, researchers, companies developing orphan products to treat people with rare diseases, and others in the State of Delaware will participate in that observance.

NOW, THEREFORE:

BE IT RESOLVED by the Senate of the 152nd General Assembly of the State of Delaware, the House of Representatives concurring therein, that February 29, 2024, is recognized as “Rare Disease Day” in the State of Delaware.

SYNOPSIS

This Senate Concurrent Resolution recognizes February 29, 2024, as "Rare Disease Day" in Delaware.

Author: Senator Townsend